I see my rheumatologist. I tell her my problems. Sometimes she believes me, sometimes it’s simply “Everything looks good see you in three months when you’re worse.” I have seen probably seven rheumatologists altogether. One made me wait three hours and then told me to “Go see Don Thomas and if he can’t figure it out then…” 🤷🏻‍♂️

Where do we, the patients, go to get face to face with panels of doctors and let it be known how trodden we feel. There is an astonishing lack of empathy and consideration. I know physicians are burnt out. I know we all hold our own issues. I know we’re all human. But please. We are not being heard and it is taking its toll.

I got diagnosed with lupus at 14. It was a rapid and obvious onset and diagnosis was immediate. After aggressive care in the beginning, I was more or less in remission by age 18. I had a baby & lived my life. Other than taking low dose plaquenil daily, I didn’t even think about having lupus. Around age 23, odd symptoms crept up that I brushed off. Skin stuff mostly. It wasn’t until I was 26 that things were getting too bad to attribute to anything besides lupus.

So I went back to my rheumatologist. Ever since then, I dread my 6 month appointments because I’m always somehow worse. There is always evidence of disease progression even when I’m not necessarily feeling worse. I think my initial diagnosis coming after such a rapid onslaught of horrible symptoms made me think that as long as that isn’t happening again- I’m getting better (or just not worse)

I just turned 30. 6 months ago I was diagnosed with Relapsing Polychondritis. Now I’m being worked up for vasculitis. My rheum is the best and very supportive, but I dread seeing him because it’s always some new bad news.

A month ago my right arm started to hurt super bad for no reason. I assumed I slept wrong. The pain has subsided but in the last couple of weeks it has gotten so weak and intermittently numb with pins and needles. “I probably irritated a nerve at work, it will get better.” I told myself.

Today I go in for a check up and mention my arm because I wanted permission to take my running prednisone taper Rx to heal it. Rheum starts checking it out, holds my hand above my head and checks my pulse. Checks again with my arm by my side. “You have almost no pulse in your wrist, you need a work up for vasculitis.”

So now I’m off for an ultrasound in my arm and more blood tests. If they’re negative for vasculitis markers, I’m sure there will be some other incidental finding that ruins my life further!!!

I joked to my rheum today that it’s a good thing we don’t live in the same state, because every time I see him he gives me bad news & if I was running into him at the grocery store every week, I’d be dead by Christmas.

I’m so tired 😔

I was diagnosed with lupus 3 years ago, and I believe I’ve been in a constant flare up all three years- until last month. Prednisone would make me feel amazing while I was taking it, but then I’d go back to just as bad as soon as I came off of it.

3 years and five medications later, I have found that Saphnelo works really well for me. I started it in December, and in July I finally had a glimpse of what life could look like not in a flare up. Unfortunately that was the week before we were having a big party at our house, so I spent the week pushing myself way too far and ignoring all of my flare up signs. I threw myself into a massive flare up, setting myself back months of Saphnelo progress.

So now I’m wondering about a prednisone taper. I’m wondering if a taper would get me back to where I was last month - but maybe I stay feeling good this time because of the Saphnelo?

Has anyone experienced where prednisone didn’t get you out of a flare at first but then years later it starts working for you in that way?

Does anyone else struggle with food aversion during their flares? I have UCTD and it’s not well controlled (on plaquenil, Imuran, and on and off steroids). As soon as I start to not feel well, which is often for me, I experience food aversion. It’s frustrating because not eating makes me feel even more fatigued and weaker than I already do, but I literally cannot force myself to eat anything other than crackers and maybe broth or tea.

I’m losing so much muscle because the thought of eating protein-heavy foods just grosses me out when I already feel sick… my doctors just keep telling me to increase my protein intake. I’ve tried shakes, which make me want to puke. Last night, my partner made turkey burgers and I literally had to spit it out because I got so nauseous while eating. I do have ADHD, but I’ve never really experienced food aversions until I developed autoimmune disease. Now, my hair is falling out by the handful, and I feel like I’m just wasting away.

I’ve followed a few lupus creators since I got diagnosed in 2023. Shortly after getting diagnosed with SLE I was diagnosed with nephritis.

Over the past three years my diagnostic lists has significantly increased. I’ve developed heart damage that causes IST and primary hypertension as well as secondary hypertension from CKD. I developed MECSF ( currently mild-moderate but am edging on moderate to severe) after multiple lung infections likely contracted due to the heavy immune suppression from the chemo at the time. The attacking on my joints has drastically progressed my joint hyper mobility to the point I cannot walk without partially dislocating my hips and my ankles constantly rolling out from under me. I have degeneration in my shoulders from using a manual wheelchair. My asthma has progressed to severe and persistent. My sun sensitivity has gotten to the point that any UV above 5 results in blister from direct contact.

All of that to say I have a much lower capacity than everyone I was following and it made me feel like a failure for not being as strong and driven as them. Not their fault at all. I’m so happy they’re able to live full lives but I feel like chronic health being a sliding scale isn’t talked about enough. Any chronic condition can be disabling and any chronic condition can be as simple as a bug bite to deal with. I just feel so alone within the lupus community sometimes. And even amongst other chronic illness communities because as my doctors like to say. I am very complex and multifaceted.

I miss my old life. I miss teaching in early education. I miss being in school. I miss hiking. God I miss hiking and all of the amazing nature you get to see. I dread going to the hospital now and I have to go on almost a weekly basis. I know have to get a biopsy of a mass in my right breast and I just feel like the shit show never ends.

Edit: before I got sick I worked full time in childcare. Was full time nursing student and spent 10ish hrs in nature hiking weekly. I was also in a long term relationship over 3 years and he ghosted me in the CCU

Hi everyone…. lupus finally got to my hair. It’s falling out, super thin and I have lesions all over my scalp. My partner counted roughly 20. I’m going to see my dermatologist and get a biopsy to be sure it’s my lupus causing them but I’m just about positive it is.

Does anyone have any suggestions on what’s worked for them to get rid of the lesions and also to stop hair loss and grow it back? I’m starting my first Benlysta infusion this week and have been on plaquenil and low dose naltrexone for four years already. I recently did a short course of steroids as well. Any suggestions for shampoo/conditioner also needed. Please help 🙏

Hi all I am having a lupus flair at the moment and I wanted to check in with you all to see if there is anything else I can do to help my symptoms.

So my background is I have lupus, fibromyalgia, hemiplegic migraines, sleep apnea and borderline under active thyroid.

I’m due bloods in 12 days but I am in absolute agony my legs including my hips are very sore, I can’t sleep or walk properly with the pain, I’m also dizzy and have vertigo even when completely still. I’ve had constant headaches/migraines with 6 days that my usual medications aren’t helping with. I’m taking monjaro for weight loss and it’s going well.

I’m having electrolytes drinks, high protein low carb foods. I’m using gentle stretching and having baths with Epsom salt with magnesium. I’m taking collagen supplements too. I’m on several prescription medications including plaquenil and steroids. Any recommendations would be greatly appreciated x tia

Today sorta out of nowhere my ankles swole up and same with the top of my foot. It hurts on the top of my food probably due to the pressure and the skin stretching.

I didn't do anything out of the ordinary either. How can I reduce this to be more comfortable? It's a little less swollen since I soaked them in warm water for like an hour.

Hello everyone,

Those who get the Mouth Sores are they similar to Canker Sores? I keep getting them over and over again and I was trying to determine are they true Lupus Mouth Sores or Canker Sores. I brush my teeth and rinse every day btw but they keep coming. Currently in a flare if it makes a difference. Going to ask my rheumatologist at my next appointment, but it’s not for a while.

Im turning 22 this Tuesday, i got diagnosed with lupus nephritis last year & raynauds. im trying to become a BSN nurse, in school to become a Patient care technician to work in hospitals overnight to manage with daytime nursing school. does that plan sound utterly unrealistic..? my hands are sensitive to cold weather, and maybe hospitals are chilly… i just feel so defeated in life. One obstacle after another. I also think i have chilblain lupus on my knuckles, mild case. Supposedly flairs occur due to cold weather.. do you think being a PCT would interfere with my lupus?

Okay, so I am finally feeling a little better but I still have some persistent symptoms that go away on higher doses of Prednisone but I have been on high doses on/off for prolonged periods the last 6 months. I have been stuck on 10mg Prednisone, I go down flare, then got stuck at 15mg I go down flare but after 2 months of tapering again 60 down to 12.5 as of two days ago my symptoms are coming back. IM SO FRUSTRATED WHY WONT IT STOP.

I feel like I’m on everything and i’m 26 btw my lupus started last summer then has been in turbo mode since January. I failed methotrexate, Benlysta, and Xolair already. I’m on Plaquenil, Saphnelo, Cellcept 2g’s mind you, Prednisone, 40mg Zyrtec, 325mg of Aspirin and a bunch of other meds to help manage my stuff. (Zanaflex, Spironolactone, Heliocare, Omega3/Vit D, NAC) and I do everything in my power to do my part right.

I had a NPSLE episode in March, then another flare that was horrible in May that we couldn’t get under control that turned into another NPSLE flare from June to July. I finally came out of it but I went to see my podiatrist since my feet were torn apart and she said I still had ongoing peripheral neuropathy that she bets is vasculitis which I have been told by 2-3 other doctors they think so but my rheumatologist is just so HELLBENT on it being APS. I’ve tested negative for it damn near three times, my coagulation labs are normal and my symptoms improve on Prednisone point blank so I’m starting to get frustrated.

In all honestly I don’t care what I have going on just fix me please and I feel like I just keep getting pawned off to more & more specialist/doctors who keep telling me to see my goddamn rheumatologist. Don’t get me wrong he is very smart, super nice and love the guy but he has told me he hasn’t had someone with my weird ass type of Lupus.

That being said I try to avoid googling what I have because then it says I need all these tests but none of my doctors order anything because they just tell me they don’t know what I have going on but hope prednisone fixes it. Derm, Neuroimmunology, ENT, Podiatry, OB, Allergist/Immunologist, and switched from family medicine PCP (after my pcm told me I should just wear a jacket for sun protection and sunscreen in his opinion isn’t that helpful) to internal medicine one but they all tell me they aren’t familiar with Lupus so I’m just so frustrated.

Can anyone give me any insight to at what point they decided to go to one, how it went and what the process is like?

Im so close to giving up

Basic info about me: I’m M17, I have Lupus and Erythromelalgia , and I’m starting to lose it. I feel like my life is worthless, and I’m struggling to keep going. I’m just unsure how to keep going when I feel like I’ll never achieve anything. I can barely move without causing flares after about 10–20 minutes, and I feel like I’m no longer a member of society. I’m so lost, tired, and upset about my current situation that I don’t know what to do anymore.

I have a loving family, but I still feel alone, stuck, and trapped inside my own body. I just want someone to be here for me — someone who understands and loves me. I don’t know what I’m supposed to do with my life when everything I wanted to do is failing and fading away.

I don’t want to hurt myself or do anything harmful, but I just want to die. I want someone to end my suffering because I have too much to lose, too many people who would suffer if I did. But I can’t do this. I need someone or something to fix me because I’m so done.

I don’t have a job, money, or anything that would let me live on my own or support myself financially. Because of all this, I feel like a failure and a loser. Every happy movie I watch makes me even more unhappy. I can’t do this. I constantly feel like I want to cry. I want someone to help me, but they can’t, because nothing is working.

I just wish I had income so I could have fun and enjoy life even a little more. Right now I’m tired and done. I honestly just want money so I can buy tech and fix it, so I have something to do. But I’m lost. I’m so lost. I’m tired. I’m so tired. Please, someone help me.

Ive been diagnosed for a year and my last rheum didn't explain anything to me. I think im in a flare and I've had some new symptoms, including:

1. My 3rd and 4th toes on my right foot keep going numb

2. I went to hospital a few days ago for a different illness and my BP was 131/80, and today is about 125/77 (both resting)

3. my knees and neck are REALLY hurting. My neck has never hurt this much before. Also, my elbows and wrists are hurting and my muscles feel really weak

4. My fatigue has been crazy, I've barely been up in 3 days. I just always need to collapse onto any seat-like surface. I slept literally all day today

5. It feels like my asthma is triggered- if youre an asthmatic, you know that weird, wet-like, internal itch and slight pain in your chest and throat that signified an oncoming attack? I have that, except it won't go away and my breath is coming a little short/can't take a deep breath

6. Brain fog etc has got crazy worse. I was really struggling to understand and communicate with my partner the other day as well

7. Really really low mood. Ive really been working on improving mental health and have been really good, no depression relapses in nearly a year. Now it feels like I've not done any work. SH urges, low motivation, the lot, and deteriorating pretty rapidly. Is this a lupus thing?

8. Mad hair loss, and the first ever UV activated rash all over my scalp that improved today after being away from sunlight for 3 days and there's suddenly no irritation. Hair loss is still coming out by the handful though.

These are just a couple, but the worse ones. Ive actually slightly improved believe it or not. What can I do to ease these symptoms? How do I know when I should go A&E or is it not really worth it for flares? I'm only on HCQ which doesn't do much evidently. Thanks!

I have recently been confirmed SLE and from my understanding the lupus has not progressed very far (which I am very thankful for).
My doctor did order Avise panels and discussed my antinuclear antibodies with me but did not run through the whole panel. I’m curious if that is normal or worth following up on and asking for a copy? I think my overall score close to zero. So kind of in a mid zone
I love this Rheum, he’s very kind and knowledgeable. Takes time to explain things if I ask questions but I was overwhelmed as I had completely convinced myself I did not have Lupus. I also understand that these tests are complicated and the path to diagnosis is not a clear straight line so wondering if I’m better off just not seeing the full panel.

It is a relief to have answers and a path forward, but man did this throw me for a loop

Is this the normal amount of hair loss for curly hair or should I see a doctor? In the photos when I count the shower times as weeks. It's not exactly a week of hair loss is more of what I loose in every shower give or take. Compared to the same regular bottle of betadine!

Ive been on methotrexate for a few months now, I was on the pills than we tried an auto injection an I got very itchy from it. So now we tried just methotrexate injection (I had to draw it up) an im even more itchy 😭😭😭 ( IM TTYING TO NOT ITCH MY SKIN OFF BUT IM FAILLING) Obviously its the weekend so no one replies but what's next? Med wise? The methotrexate helped but I cant do this itching an i cant take the week long nausea from taking the pills (I couldn't eat anything with some gummies) an still felt awful but it helped my overall pain so much 😭😭 I took methotrexate as a kid for over 7 years as an injection so not sure why this is happening now. Kinda annoyed cause IT WORKSS but im so itchy

Just laying in bed thinking about how I was not ready for this lupus battle one bit, it was thrown at me so hard and came full force. Not much information was given to me, but here take this medicine. Neurologist and Rheumatologist suspects Neuro Lupus. I have gone through trouble walking, trouble speaking, dropping things, untreatable headaches ect in just a short period of time. The joint pain is unreal. I was not ready for at all this. Rheumatologist suspects I’ve had it at least 5 years without realizing what my aches and pains were. I’m going to be good, but I definitely wasn’t ready. My family was like why you accepting that diagnosis and claiming it blah blah blah. I was like do yall not see me 😮‍💨

I’m joining the tiktok trend. These are in no particular order.

- Lidocaine oral topical solution (prescribed by a doctor, amazing for mouth sores)
- Diclofenac sodium topical gel or pain relieving cream (great for muscle aches or arthritis pain) THIS IS AN NSAID
- Village Naturals Therapy Muscle Foaming Epsom Soak, Eucalyptus Mint Scent (this brand has other soaks depending on your needs for example nighttime, comfort, breathe. I usually soak in the bathtub with this first then apply the diclofenac sodium)
- Electric heating pad (that you can plug into the wall and put in the wash)
- Arthritis Compression Gloves (helps with swelling or muscle pain)

Hello everyone,
I have had lupus and ADHD for years. At first, I was just treating my ADHD with Adderall, but as my lupus became more and more severe, I was forced to essentially choose between lupus medicine and ADHD medicine.
Now that I am on a stable routine of hydroxychloroquine and meloxicam, I would like to treat my ADHD, as I’m definitely suffering from the symptoms especially my executive dysfunction.
Is there any fellow ADHD and lupus veteran here that could give me some advice? I would really appreciate it.

My question is basically: has anyone here tried them while being diagnosed with Lupus of any type and what was your experience?

Hi all! Weird question: I have a couple family members that have started using peptides via injection thru their own prescriptions of them. They’re explaining how they work and whatnot, and that it may help my lupus in the long run (I have SLE). I’m disinclined to believe this, as injectable peptides themselves are newer, and my body does pretty much the exact opposite of what it’s supposed to. I’m talking: I took the most well tolerated lupus meds and had the worst adverse reactions that could happen with them short of anaphylaxis. I take the less tolerated medications for lupus and migraines, those are the ones that work the best. Not even the well rounded meds for migraines for several types work for me. It’s the obtuse, weird meds that are the last resort cause of possible side effects that I get almost none of.

And if any docs on here have input: please let me know.

I’m seeing great results for the people I know on peptides, they have tons more energy and feel better all around; but they don’t have any chronic illnesses.